Our ped endo has brought up the Panda Study as an option for our family. I'd be interested in getting our T1 son's brothers tested to see if they are "at risk", especially our youngest. And, I like the idea of contributing toward diabetes research. But, I'm not sure what kind of commitment it will take, and whether or not our boys would be willing to commit to any long-term follow-through.
Is anyone in a long-term study of this type? What has been your experience? Recommendations?
Mo
Monique, I believe you just may be the first person to participate (or think about participating) in a long-term study, judging by the number of responses this thread has recieved :) Have you decied to go ahead with it?
Alyssa Monique, I believe you just may be the first person to participate (or think about participating) in a long-term study, judging by the number of responses this thread has recieved :) Have you decied to go ahead with it?
Hey, Alyssa,
It has been kinda quiet on this subject, hasn't it? :)
I'm off to my "beyond basics" class tomorrow morning (8:30 plus an hour drive, plus a 15-minute check in...I'm not sure I can get myself out of bed that early :), and if the opportunity comes up, I'll get more info. So, no, I haven't decided, but am really considering it. It's really going to depend on the details and obligations. Taking care of a child with T1, plus taking two more kids in for regular testing? I'm not sure how well that's going to work out. I also stumbled across a clinical trial looking specifically for honeymooners, testing a drug for preserving those last, die-hard beta cells. How tempting is that? For myself, I'd probably really consider it, but for my child? I just don't know.
Anyway, I'll let you know if/when we make a decision. So many little decisions every day...:)
What IS the Panda Project? I googled after seeing this post, but came up with several things. Is it something that is just available in your area of the country? I'm in the Midwest USA.
What are those????? I know I'm having a moment right now but I really don't know what either of those are. I've never even heard of them!
Brittany
Yeah I'm a Diabetic but it's not gonna get to me because I won't let it!
I think the studies are regional. Here in Georgia, it's the Panda study, but I've seen other similar studies in other regions called other names. The Panda study is two-fold.
In one part, the siblings and/or children of people with T1 can be tested to see if they have the gene marker, and then are tested every six months for the antigens that indicate T1 is developing. The hope is that when an intervention is developed, we can catch the autoimmune process early on, and stop it from developing into full-blown T1.
In the other part, people with T1 have some additional testing done to "classify" their T1, and then are tracked long-term to see what, if any, complications develop.
Your endo or DE should have information about studies in your area if you are interested, or you can check the JDRF site.
Thanks for the info. I'll have to check with Iowa City hospitals.
In Iowa they are called TrialNet studies.